What I've Learned About Bravery as the Parent of a Child With a Degenerative Disease

When my daughter was diagnosed with a rare, neurodegenerative disease in 2015, the old me died. I lost myself in the endless pursuit to save her. I began to dive into the leukodystrophy community to find anything and everything I could to help her. I spent most of my time researching and making phone calls to get Jordyn enrolled in a research study I had heard about at Children’s Hospital of Philadelphia. They had a new Leukodystrophy Center of Excellence that had just opened. We would end up traveling to Philly every year, sometimes multiple times a year for research visits and other procedures.

We were not prepared for everything that was to come in the following years. At 2 years old, Jordyn was enrolled in First Steps. She had her first seizure, but it didn’t seem to affect her development. She was crawling, walking, and even battling her dad with lightsabers and keeping her balance. But in the summer of 2018, Jordyn had a horrible seizure that lasted nearly 30 minutes. She hasn’t been the same since. She kept getting sick after that and got pneumonia and the flu the following year. She lost her ability to crawl, walk and even sit up on her own. She now struggles to hold her head up and her energy level has dipped way low. She’s still fighting, but the fight has slowed down.

We’re no longer running at the pace of a freight train. Five years with this disease has taken its toll on Jordyn and me. She is on seven different medications to battle the symptoms that keep showing up. She has seven specialists that we travel four hours one way to see because that’s the closest place we could find a specialist for her disease. We have six pieces of medical equipment that help her move through her day and are working on installing a chair lift for the stairs in our house.

I’ve gotten really good at harnessing my grief. Looking back, I guess I’ve always been that way. I was taught to be tough, to hide my tears and suck it up. It takes a lot of energy to suppress the emotions a mother feels when she knows that only a miracle will keep her daughter from dying. I only let that thought slip in long enough to get back to the fight — to remind myself what it is we’re fighting for when things start to become too difficult.

The truth is, though, sometimes I just want to scream. When people ask “how are you?” Or “how is Jordyn?” I just want to tell them the truth. I’m tired of saying “good” or comparing her to other kids who are doing worse, as if comparing her makes things better. It’s the lie I tell myself so I can keep moving forward. The truth is that she’s not doing well. She’s “healthy” in that she doesn’t have a cold, the flu, or something similar, but she’s far from healthy. She’s losing skills at what seems like a rapid rate and it’s almost more than I can bear.

Until we can find a cure or a treatment to slow progression, she’s in a sense dying. I’ve never so much as whispered those words because the pain is unbearable. The grief is more than I can handle and I’m not OK. I’m clinging to the time I have with her. I’m taking all the pictures and videos to remember these moments. I stare at her while she sleeps so that I never forget that image, that peacefulness on her face.

Hug your babies tight and appreciate them for every little thing they can do. Be in the moment and try to give them grace when they make a mistake. Check on your friends and loved ones. You never know the internal battles they are facing. Embrace who you are and don’t be afraid to ask for help. It’s not a sign of weakness, but rather, a sign of bravery. ❤